Another ECHO

Hello Everybody,

Sorry for the long delay in updating Jordan's site. She has been doing great. We went to clinic today, but first she had to have another followup Echocardiogram because ever since she came down with the shingles, she has had fluid around her heart. It is not considerable, but they keep checking every 2 weeks or so. Today's results were the same, still about 5ml of fluid around the heart....normal is 1ml. Dr. Dudlani (cardiologist) is not concerned, but wants to repeat the Echo again in about 2-3 weeks to see if it's any better.

She had labs drawn today, as usual, but we weren't in clinic long enough to get the results and Dr. Petrovic. She said she would call with the results, but hasn't yet. No news is most likely good news. Her counts have been stable for many months, so we are not expecting any surprises.

We hope you are all doing well. Thanks for continuing to check up on Jordan, it puts a smile on her face to read your guestbook entries.

Lots of love,

Katherine

Day + 208

Hi Everyone,

Day +208

Jordan went to clinic today for a recheck on the shingles, which are healing nicely. She's has been quite nauseous the last week or so because they have her on such a high dose of antibiotic to cure the shingles. Thankfully she only has 3 more nights of the Valtrex.

I did get some rather sad news today. Our good friends Rick and Mari lost their son Danny yesterday afternoon. We became quite close to their family and if any of you have read this journal you would be familiar with Danny. He and Jordan both had Leukemia with the Philadelphia Chromosome. Both presented to the doctor last year with back pain that was later diagnosed as Leukemia.

They also both had their bone marrow transplants on the same day....June 14, 2006. We were 'neighbors' in the hospital during transplant, our rooms right next door to each other.

I became friends with their family, we were tied together in this close bond of BMT and reached each milestone on the very same day.

We've stayed in contact through e-mail and I have seen them many times during clinic and also when Danny was back in the hospital for various reasons.

I have a very heavy heart today, knowing that Danny has left this earth. But my load it lightened knowing that he is free of pain and no longer suffering. I also know his family has a tremendous faith in God and they will get through this with much grace.

Please say a prayer tonight for Rick, Mari and Ricky as they face these days without their son and brother.

God Bless you Danny. You will be missed.

Love to you all,

Katherine

Home again

Jordan is home!!!

She was released tonight, so she only spent 4 days in the hospital, twice as much as they projected. It always turns out that way, doesn't it. 24-48 hours ends up being 4 days. Oh, well.

We are incredibly thankful to her doctors and nurses for all the care she received while in the hospital. We even got to see a couple of nurses from the BMTU, that was a great surprise, since she wasn't on the 2nd floor which is where HEM/OC is located.

She still has to continue 7 more days of antiobiotics and she has to drink 2.5 liters of water every day to flush them out of her system, so they don't damage her kidneys.

They lowered her Cellcept and FK506. The Cellcept is used to suppress her immune system so her donor bone marrow doesn't attack her body. They lowered it a couple of weeks ago with great success, so now they are lowering it again.

She ended up getting IVIG while she was admitted even though her IG level wasn't below 500. It's been several weeks since she has had an IVIG infusion. Lowering the Cellcept has been a big contributor to her not needing IVIG every three weeks. We are looking forward to making that timeframe even longer since they are lowering it again.

Her spirits are up. She was thrilled to be coming home and Kennedy was beyond excited to see her. It was adorable. She really missed Jordan. They spend 24 hours a day together and she was literally heartbroken the first and second night Jordan was admitted. I found her sitting by Jordan's bedroom door, looking terribly sad, ears back, and she was kind of slouched over with her shoulders hunched forward. It was pitiful. She's much better now and so is Jordan.

Thanks to you all for the extra prayers for Jordan's speedy recovery. The power of prayer is amazing.

Please keep some other friends in your prayers as they are fighting very hard.

www.caringbridge.org/fl/mark

www.caringbridge.org/fl/taylor

www.caringbridge.org/visit/katehrischuk

www.caringbridge.org/ny/penelope

We lost a caringbridge friend this week too. Please pray for his family as they struggle through this loss.

www.caringbridge.org/ms/brentnason

Much love to you all.

Katherine

Shingles

Hi Everyone,

We've had an eventful couple of days. Jordan decided she wanted to start the new year off right by being admitted into the hospital. ;-) She's back at All Children's Hopsital (ACH). She was admitted on 01/01 because she has come down with a case of the shingles. Can you believe it? This is her first admission since she left the hospital on July 5th after her bone marrow transplant. She has done amazing since transplant and it's actually quite remarkable that she hasn't been admitted for anything since she left.

She broke out in a small rash on her right thigh and we were watching it to see if it got any worse before calling the doctor. We were hoping she would make it to clinic on Tuesday without it worsening, but we weren't that lucky. It spread like wildfire on Monday and became very irritated and was causing her A LOT of pain.

So, we called Dr. Petrovic and sent her an e-mail with a digital photo. She called back and said Jordan had to be admitted for high dose Acyclovir antibiotics via IV for approximately 48 hours.

Ironically this is the same antibiotic they took her off of about three weeks ago. We passed the 6 months post transplant mark and they were beginning to wean her off some meds, the first one was Acyclovir. She had been taking it as a preventative medicine ever since transplant to avoid these types of situations.

So, long story short, her immune system isn't yet up to conquering these type of things on it's own yet. She'll be back on the Acyclovir at home once she's discharged.

Luckily, she doesn't have any other symptoms, no fever or positive cultures, etc. It's just the shingles and she'll be happy as a clam once they are gone.

Please keep her in your thoughts and pray the pain isn't so horrible and that she has a quick recovery and comes home very soon.

On a different note, we have a caring bridge friend at ACH that continues to fight for his life. Please visit his site and post a message to his parents.

You can visit Mark at: www.caringbridge.org/fl/mark

We have another friend that we actually know pretty well. He had his transplant the same day as Jordan and our families became friends because of this unusual connection. His name is Danny and he is also fighting hard in PICU at ACH. Danny doesn't have a caringbridge site, but please say a few prayers for him too. He needs prayers for his lungs to recover so he can come off the vent and wake up to his family.

As always, we appreciate you checking in on Jordan and keeping her in your prayers.

Love to you all,

Katherine

Day + 201

Happy New Year!

Day +201

It's hard to believe it's already a new year.

How do you measure a year? 365 days, 12 months, 52 weeks, 8,760 hours, or 525,600 minutes? We look forward to a new year, making resolutions, setting goals and hoping for the best.

My hope this year is that I can measure it differently. Measure it by laughter and love, smiles and giggles. To see life through the eyes of a child, full of hope and fun. Live in the moment and enjoy all the moments I am given because I never know when they will be taken away.

Never pause to tell someone you love them and pray every day.

My hope this year is that all of our children fighting for their lives continue to beat the beast of childhood cancer. May they continue to receive the best care available and win the war. Here's hoping that 2007 is not filled with needles, biopsies, surgeries, chemo and radiation, but instead with clear scans, good blood counts and strong bodies.

Lots of love to you all,

Katherine